Camp is a healing for kids with heart problems

DEDICATED DOCTOR: Dr. Lloyd Feit, the director of the Pediatric Heart Center at Hasbro Children’s Hospital, has been a pediatric cardiologist in Rhode Island for more than 20 years and oversees children while they participate in the camp.

MATTERS OF THE HEART: After losing their 2-year-old daughter, Gabrielle, to heart complications, Louise and Jeffrey Dinsmore, along with Dr. Lloyd Feit, co-founded the Gabrielle Dinsmore Heart Camp, an event that provides a place where children with heart disease, congenital heart defects and severe feeding issues can have fun while learning educational skills that will help them deal with the challenges they encounter due to their condition. The second annual camp will take place Aug. 23-26.

Residents Louise and Jeffrey Dinsmore, whose 2-year-old daughter, Gabrielle, passed away in 2010 due to complications from heart disease, say the best way for them to cope with their loss is by helping children living with heart disease realize they can lead happy, normal lives.

According to The Children’s Heart Foundation, congenital heart defects are the leading cause of birth defects around the globe, as well as the top cause of birth defect-related deaths in America. Nearly one of every 100 babies is born with a heart defect.

That’s why the Dinsmores, along with Dr. Lloyd Feit, the director of the Pediatric Heart Center at Hasbro Children’s Hospital, co-founded the Gabrielle Dinsmore Heart Camp, an annual event that aims to provide a safe environment where children with heart disease and congenital heart defects can have fun while learning educational skills that will help them deal with the challenges they face.

“We want to show kids and their parents that they are going to be OK … that they can do fun things,” Louise says. “We want to introduce them to other kids who have similar conditions so they know they are not alone.”

Feit, who has been a pediatric cardiologist in Rhode Island for more than 20 years, says that while he is impressed with how far doctors have come in their ability to manage patients medically, as surgeries that weren’t successful when he first started his career are now regularly performed, he feels many of them have not kept up with their ability to help families manage “normal” lives.

However, says Feit, that’s why the heart camp is important.

“Families become almost paralyzed with fear that their child who had heart surgery will have problems when they go out to play and we want to let parents know that their child can spend a weekend away out from under their watchful eyes and be fine,” he says. “At the same time, kids and their families have an opportunity to interact, make connections and realize, ‘I’m not alone.’ It gives them a chance to interact with other children and feel more comfortable with themselves.”

Since it’s a summer camp, children will have the chance to partake in outdoor sports, including swimming. While it isn’t easy for children who’ve had open-heart surgery to show their scars, they feel less self-conscious in their bathing suits at the heart camp because they see that other children have the same scars.

“So many of the girls came up to us and said, ‘I feel accepted here. I don’t feel embarrassed because these kids look just like me,’” says Louise.

Feit agrees and said that’s the whole idea.

“It’s all about trying to empower the patients as we go forward,” he said. “Some of them let what they’ve gone through define them and they should not. It’s a part of them but not who they are definitively.”

This year marks the second year the Dinsmores and Feit are giving children from Rhode Island, ages 8 to 14, the gift of participating in the heart camp at no cost.

The overnight camp will run from Aug. 23 through the 26th at Cub World at 704 Buck Hill Road in Pascoag under the medical supervision of Feit, as well as members of his staff.

“He’ll have a whole medical team with him,” says Louise.

Further, the American Heart Association will have a strong volunteer presence at camp.

So far, more than 40 children have enrolled. The Dinsmores and Feit are hoping for more, as they believe the camp is extremely beneficial for participants and has the power to alter lives for the better and help them build confidence.

“The camp is a life-changing experience for these kids because not a lot of mainstream camps will not take kids who have this kind of medical condition – they are afraid from an insurance liability standpoint,” Louise says.

To change that, the Dinsmores and Feit, who diagnosed Gabrielle’s heart condition, launched the camp in August 2011 with an inaugural class of 37 children. The concept was born at an event two months after Gabrielle’s death when Feit approached the Dinsmores and told them it’s always been his dream to start a camp in Rhode Island for kids who have heart disease.

For Louise, a successful fundraiser who has helped raise more than $45 million for various organizations through the course of her 20-year career, and Jeffrey, a program coordinator for the North American Family Institute in Rhode Island, a human services agency that aids youth, adults and families, establishing the camp with Feit was a no-brainer.

“We want to bring our talents to our community to help other kids so I said, ‘As long as my husband and I are alive, you will never, ever have to worry about funding for this camp,’ and we promised him we would work together as partners to make the camp a reality,” says Louise.

Jeffrey also said the camp, as well as the non-profit organization they created to fund camper costs, the Gabrielle Dinsmore Heart and Hope Fund, is a means for them to remember their daughter.

In her short life, Gabrielle, who was born seven weeks early and weighed only 3 pounds, 15 ounces, suffered from a congenital heart defect, Hypertrophic Cardiomyopathy, an extreme thickening of the heart wall muscle, and a host of other heart complications. She braved three open-heart surgeries, plus a surgery to insert a feeding tube into her stomach.

“She was a very tough girl who took everything that was thrown at her and I don’t want people to forget about her,” says Jeffrey. “Having the camp in her name is very special to us because we decided to channel our grief in a good way. We could have sat home and did nothing but we needed to do something. She has given us so much strength.”

The Dinsmores say they will be forever appreciative to Feit for sharing his idea with them. Feit says the feeling is mutual.

“Louise and Jeff are fantastic,” he says. “The camp has been an amazing success and I’m grateful for the Dinsmores for understanding my vision.”

Praise for the Dinsmores doesn’t end there. Mayor Scott Avedisian, a longtime friend of Louise, couldn’t say enough kind things about them, as well as Gabrielle.

“Gabrielle was a beautiful girl with a bright, energetic smile that made the whole room light up,” says Avedisian. “The fact that Louise and Jeff are doing so much to help children in need in honor of their daughter is a testament to their big hearts and big personalities. Louise has been a friend since college and I am so happy that she remains an important part of my life.”

In addition to the camp, the trio has planned other recreational opportunities for children with heart defects, as well as their siblings and families, through partnerships with Whole Foods at 151 Sockonasett Cross Road in Cranston and Button Hole Golf at One Button Hole Drive in Providence.

While the event is already at capacity, Whole Foods will present “Grillin’ & Chillin,’” a healthy eating and cooking event for “heart families” July 12 from 6 to 7:30 p.m. in which Whole Foods chefs will host a tour of the store and demonstrate a healthy grilling option.

Similar events will be held at Whole Foods Oct. 5 and Dec. 6 from 6 to 7:30 p.m. RSVP is required. Email Louise at LDinsmore16@yahoo.com to reserve a spot.

At Button Hole, children aged 7 to 17 will learn the basics of golf during six free 90-minute lessons from 5 to 6:30 p.m. July 18 and 25, Aug. 1, 8, 15 and 22. Participants must commit to attending all six sessions. RSVP by July 15. Lessons will be held rain or shine.

Also, two “Fun Days” at Button Hole will be July 2 and 9 from 5 to 6:30 p.m. On the 2nd, participants will take part in the Titleist Performance Institute, a program that focuses on teaching and improving Fundamental Movement Skills using a variety of sports equipment to develop skills that are used with a golf swing while highlighting overall long-term athletic development. RSVP by Saturday. On the 9th, participants will learn the basics of golf. RSVP is also required.

Applications are required, which includes medical forms from a cardiologist and pediatrician. Log onto www.HeartandHopeFund.com for all application forms. Deadline to apply is July 1. For more information, contact Liz Estrela at 444-3370 or eestrela@lifespan.org.

Visit the website for updates and more information and check the site regularly, as recreational activities are being planned. Check them out on Facebook by typing in Gabrielle Dinsmore Heart and Hope Fund into the search key.